Wednesdays are movie days for Marty and me. We go early in the afternoon when there is virtually no one else at the theater. For someone who has worked all their life going to the movies in the early afternoon in the middle of the week is positively decadent, but then I’m a real bon vivant.
This week the movie choice was “Love and Other Drugs” a decent sort of romantic kind of comedy thing starring Jake Gyllenhaal and one really hot Anne Hathaway. The plot follows a shallow pharmaceutical salesman (Gyllenhaal) who meets weird Maggie (hot Hathaway). They have a lot of naked sex, eventually fall in love and break up because Maggie has stage 1 Parkinson’s. The line that got me was when she said, “I will always need you more than you need me.” It felt so familiar.
Gyllenhaal’s character, Randall, is faced with the most basic of questions, will I stay or will I go. Maggie bullies Randall into leaving and eventually he leaves Maggie to the natural course of the Parkinson’s. Randall is just like a lot of us who are faced with a partner with a catastrophic illness, we ask ourselves do I leave or do I stay.
I would be lying if I didn’t admit to thinking about bugging out from time to time. I have plotted; I have calculated how I could do it and still feel like a human being. I could find a great retirement home for Marty; I could get her set up, then leave, just go and never look back except to call the kids from time to time.
The overall feeling of anxiety and stress for caregivers is at times overwhelming. The worst part is that care giving is never-ending and the only true end is the worst end, death. The concept that cures are not forthcoming and that Marty will never really be better than she is right now, has always been the most difficult part for me to accept. I can do anything for a finite period of time, forever is a difficult concept when you are talking about caring for someone who cannot care for themselves.
I’m not entirely sure why leaving or staying was never a real choice for me. I’m not amazing, I’m not particularly benevolent or selfless, I’m not a natural caregiver, I’m none of those things. It has always felt like staying and taking care of Marty was the only right thing to do, it was the only thing I could do. Staying was not just the right choice, it was the only choice.
I remember wondering why Marty’s father did not put her mother into a nursing home after her health continued to decline. Marty asked him. He said it just wasn’t the right thing to do. Marty thought he was afraid of loneliness and facing the reality of his wife’s situation. I know it’s because he never really had a choice, it was what he had to do because he loved her, because it was what he promised her when they married, that he would care for her even when it got hard. I didn’t understand before, I do now.
There are millions of people today who provide some level of care for their spouse, their child, their parent, their partner or their relative. I can guarantee that almost all of them have at one time or another said, “screw it, I’m out of here,” and then in spite of it all stayed, not because they were saints but because it’s just what so many every day people do, it speaks well of the human condition.
Every time I have ever thought about ditching the whole thing I see Marty, I see her sitting in her wheelchair or laying in her bed and what I see is my wife who I love and I know loves me even when I want to run. What I see is a woman, who has had so much of the best parts of her taken away, yet she still smiles, she still laughs, she still loves the people around her, she still corrects me and completes my sentences, she still really loves me and she really needs me to be better than I am. When I think about it, when I think about the line in the movie about her needing me more than I need her, I’m not sure. I suspect the cold truth is I need her every bit as much as she needs me and I’m happy with the choices I’ve made.


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Comments
Now that Lance is gone I sometimes wonder who will take care of me if something happens? But that was never the question before, as I assumed we were taking care of each other. Life can be so complicated. I guess we do what we need to do and hope someone will do the same for us if need be.
I would not trade a day of my 30 years with Lance. I'm at peace with me...and I see you are also at peace. My best to you both, as always.
I, too, had the same existential struggles for a year and a half when I took care of Mom in her, to use your language, "new reality" of Alzheimer's. I toyed with the idea of running away (I am very big on running away, if you want to know the truth). In the end, like you, there was no choice - only what felt was a natural extension of our relationship - I thought, well, she surely put up with alot from me when I was a 17 year old psychological train wreck - now I have the opportunity to give a little back. As I look on that time, though, I realize that even in her diminished capacity, she was still giving more than I was. Wonderful post, MH!!!
you and marty have many years of joy ahead of you. hugs to you both.
I've never thought about what it would be like to be in your shoes and have to decide to stay or to go...and of course...I'd be doing that thinking too.
Being the kind of man you are and the kind of human you are...you of course stay...but "of course" is not a no brainer....until you tell it! : )
r -
Very special .... very special indeed.
Buffy -- Me too. I wonder who will be able to care for me, it's hard enough to find someone to take you for the good ol colonoscopy.
Kit -- it really is one of those one day at a time things, anything more is tooo much.
Zanelle -- It is without a doubt the most decent thing I have ever done
Antoinette -when we started this part of our journey everyone thought it would be short -- now I see it could be a lifetime, and that's okay
JD -- in truth, I would have thought I was a walker, but life makes you change
Kate -- there is no doubt that Marty gives to me each day -- unconditional love and approval is hard to find now days.
Thanks to all for reading and commenting..
"I’m not entirely sure why leaving or staying was never a real choice for me.
I’m not amazing, I’m not particularly benevolent or selfless, I’m not a natural caregiver, I’m none of those things. It has always felt like staying and taking care of Marty was the only right thing to do, it was the only thing I could do. Staying was not just the right choice, it was the only choice." This is how it was for me for 16 years. -R-
Very nicely done. But I am always impressed by what I see here.
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I think you are.
R
I too sometimes wonder like Buffy who will take care of me when I need it, as you do feel when married you are there to take care of each other. Sometimes when I think that it scares me....
I am SO happy to see this got a very well deserved EP...ALL your writing should get EP's and covers just for showing the love side of life.
The truth is that I know that I'll be "stuck" with him, because I deeply love him, and all threats are meaningless, as he knows. Thank you for your sweet insight showing how love can continue, life can continue, different than the one we might know, but still "life" with someone that we love.
I think that you'd be nuts if you didn't feel like cutting and running sometimes, the difference here, my friend, is that you are honest about it. Marty is very lucky to have you!
BTW (spoiler alert) I think you fell asleep before the end of the movie, because they do come together again.
My mother had cancer for 3 years and my sisters and I took turns being her caregiver. It was draining, and my own marriage was on shaky ground at that time. I had entered that limbo where only the present moment existed, and what to make for lunch that she would eat. She was failing, and I was desperate to have a life again. I handed her off to my sister, and fled.
She died just three weeks later. I was 800 miles away.
Maybe it wasn't as stark a decision as yours, since I had "back up" but really, the guilt doesn't go away. I am not the better person that the experience of caregiving can create. I still have a sense of failure and worthlessness that feels like molasses in my gut. You are doing the right thing. I'm sorry Mom.
Rated.
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Bless you. And bless Marty.
Lezlie
Dad (and to a lesser degree I) cared for my own mother for 20 years after she suffered a stroke.
I want to say that in my experience and opinion, it's not only caregivers who struggle with "should I stay or should I go" (and i dont
mean 'leave', i really mean 'live'). And many of them lack the power or physical ability to "go".
These questions and challenges are equally felt by those who are being cared for.
R
I think the world has found you, my friend!
They are the fortunate ones!!!